SICKLE CELL DISEASE: FAMILIES’ BURDENS.
Families’ burdens can result from a challenge of chronic disease. Such chronic disease is Sickle Cell Disease. We shall look closely at families’
burdens that are consequences of sickle cell disease.The burden of sickle cell disease in Nigeria is a big challenge, consequently, families crumble
under the weight of its impact on them. Again, the burden of sickle cell disease is magnified in a developing country like Nigeria. Likewise,
healthcare is in a shambles in Nigeria, yet patients need hospitals that are effective. They can be in dire health emergencies that require prompt
medical intervention , but help never comes. The burden is a nightmare for families.The weight of Sickle Cell Disease in families is devastating and they struggle hard to cope.
FAMILIES’ BURDENS.
Financial Burden:
Firstly, Families suffer under financial burdens because of sickle cell disease. Persons living with Sickle Cell Disease take routine drugs. They get
sick regularly, and as a result hospitalizations are common to treat one ailment after another. All these cost money. The person also needs to have a
good quality of life to prevent complications. Good, healthy food is not cheap and considering the
size of most families in Nigeria, it is a heavy expense.The burden of the cost gets heavy and families groan under the weight. Furthermore,
employment and good pay is not common. Nigeria does not have effective healthcare insurance nor social welfare systems. This makes caring for a
child with a chronic illness a financial burden. Families have to pay for food, shelter, and adding the huge cost of routine medication is not
acceptable to them. The bread winner is often the man and this brings on conflict. In fact, finance generates a lot of conflict in homes.
Emotional Burden:
Secondly, is the Emotional Burden of Sickle Cell Disease. It tears the families apart . The constant visit to hospitals, parents watching helplessly
as the child suffers painful episodes invariably tests their emotions. The family lives in constant fear of losing a child because it is believed that
people with sickle cell die early. It puts a lot of pressure on relationships. Other children do not get the
required attention from parents, therefore, sibling rivalry ensues. Sickle Cell creates anxiety for couples.The emotional burden includes regrets,
blame, frustrations and consequently, these strain marriages. There is usually a lot of conflicts between a couple who have to care for challenged child. https://symbiosisonlinepublishing.com/genetic-science/genetic-science13.pdf
Additionally, it is sad to note that some marriages have ended in divorce because the man cannot accept the health challenges of the child. Some
claim they did not father the child and accuses the wife of infidelity, consequently abandons the wife with the sick child. In fact, sickle cell tests the strength of the cords that hold the couple.
MORE FAMILIES’BURDENS
Health Burden:
Thirdly, the stress from the chronic challenge affects the health of caregivers at home. Caring for a child with sickle cell is tough. Those
sleepless nights eventually take a toll on the woman’s health. Parents live a life of anxiety, worry, and sorrow and as a result, their health is
compromised. Many mothers are the ones that give direct care to sick children so are more prone to taking the heat of the challenge. Fathers get worried since their
spouse is worried. The health issues that result from managing the challenges include High Blood Pressure, Depression, and stress related
diseases. Sickle cell disease takes its toll on families because it exerts unimaginable weight on them. Families crumble especially when there is
no financial support. Women tend to bear most of the pressure because society blames the woman for the outcome of children. This is a good
reminder that stems from ignorance of what sickle cell really is. Unfortunately, there is not much success especially in rural areas, about the education on what
causes sickle cell disease. https://familyfaculties.com/2020/06/10/what-is-sickle-cell-disease/?_thumbnail_id=425 . Equally important is the fact that
many care givers end up with psychosomatic health issues that consequently arise from the pressure on them. Sickle Cell Disease creates families’ burdens.
Cultural Burden:
Fourthly, is the cultural burden. Children are very important to Nigerian families. There is the belief that children sustain family legacy. As such, the threat on the health of a child is
a source of concern. The stigma on sickle Cell disease gains impetus , consequently, the family is under pressure and hides the health challenge.
Therefore, the family is branded if people know about it. Many people lack knowledge about sickle cell disease. The crisis and pain of sickle cell drives most
families into religion or fetish beliefs because they are looking for a cure or solution . There is the myth that such children are Ogbanje or Abiku.
These mean that the children are on rounds of birth and death. Furthermore, the attitude of the community to families with sickle cell
disease creates more pressure on them. There is the myth that sickle cell is as a result of supernatural retribution and thus, the family is cursed.
Finally, sickle cell disease puts enormous burdens on families. It devastates even the strongest of families. Love may not survive the storm of sickle cell
but commitment, compassion and friendship would help the survival of relationships. Young unmarried couples can eradicate sickle cell disease if
they know their genotype and then make informed decisions. about who to marry.
Article Sources:
- http://www.eajournals.org/wp-content/uploads/Perceived-Psychosocial-Impact-and-Coping-Strategies-among-People-Living-With-Sickle-Cell-Disease-in-a-Local-Govern
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4639479/
- https://symbiosisonlinepublishing.com/genetic-science/genetic-science13.pdf
- https://scholarworks.waldenu.edu/cgi/viewcontent.cgi?article=3672&context=dissertations
2 Comments
Smith Nwokocha
Awesome
Anya Chuku
Well articulated and timely.